Not answer I expected....

[Renrn]

Hey everyone,

My name is Ren and I was diagnosed yesterday with MS. Two weeks ago, I had an episode of slurred speech and weakness that I thought was a sleep deprivation migraine, thankfully my husband insisted on a full work up.

Needless to say, my world is spinning. So any advice, encouragement or direction would be a huge help. I want to do everything I can to be active for my 16 mnth old son as long as I can.

Thanks
Ren

[cocogirl]

Renrn, so sorry for the diagnosis you received but welcome here.

Please know that this is not a death notice. You can certainly raise your son with MS. I raised two children and I had the MS their whole lives. It did help when my daughter got her driver's license. That took a lot of stress off of having to drive them to their activities. That had been my prayer, to let me function well until they were old enough to do for themselves. It didn't quite work out that way. My first long term paralysis came when my daughter was 11 and son was 8. I did have an amazing husband and a huge group of friends from my church that brought in meals, drove kids, and even cleaned and ironed for me.

I encourage you to cherish each day with your son.

[LIMBO72]

Hi Ren. You've come to the right place. The people here are amazing and very supportive. I'm a newbie as well. DX'd two weeks ago. I know what you mean by your world spinning. As I'm new too, all I can suggest is reading and learning as much as possible. Just be careful what sources you are reading from. Someone on here suggested that I get Multiple Sclerosis for Dummies......yes, believe it or not, they make one of those books for everything.

Stick around here and you'll get lots of support.

[DJ in TN]

Hey everyone,

My name is Ren and I was diagnosed yesterday with MS. Two weeks ago, I had an episode of slurred speech and weakness that I thought was a sleep deprivation migraine, thankfully my husband insisted on a full work up.

Needless to say, my world is spinning. So any advice, encouragement or direction would be a huge help. I want to do everything I can to be active for my 16 mnth old son as long as I can.

Thanks
Ren

Hi Ren,
I've been dx'd w/MS since 1995. I can relate to your world is spinning. My kids were 9 & 11. We are all quick to give advice but all I know for sure to say is to keep God close to your heart at all times, keep your doctor(s) informed of any changes, try to get on an MS medication as soon as possible and always remember this site. There is always someone here to cry to, laugh with or just to ask a simple question.
Debby

[seagullcaller]

Son was one

Hi Debbie, I was diagnosed almost nine years ago when my son was one. It was a scary time of uncertainty for me. I saw two doctors before I finally found the one I stayed with. I needed someone who I felt was competent AND compassionate. Although I did not realize it at the time since I knew nothing about MS at that time, I also needed a doctor who would listen to me and allow me to feel like a participant. The doctor that I stayed with for five years gave me choices. Although I did not know what I wanted in the beginning with time I did have preferences and she was very open to hearing from me. I think what helped me then and still does with the new doctor who I have now who is similar is that I was confident in my doctor and felt that she really cared about me as a person. I hope that you can find a doctor like that. I would encourage you to keep looking until you do.
The other thing I did was attend a MS support group and that was also a big help to me in the beginning. I am glad that I found this on line as I am sure it will be just as helpful. Keep reaching out.

[phoebe.]

Hi Ren.

I am also newly diagnosed - a week ago. I feel like part of my life is imploding. I cried for two days. I am now in action mode - trying to read and learn as much as I can so I can stay as healthy as I can. I've learned a lot already from the folks here.

Everyone says finding a supportive group is essential, so I am trying to find one. I am single and my family is not nearby so that worries me a little. I think this online group will be helpful.

I would suggest contacting the MS society. Depending upon where you live they may have various events. I attended a dinner sponsored by them earlier this week and connected with others with MS.

phoebe.

[KoKo]

Hello Ren

Welcome to MS World - nice to meet you!

You've come to a great place for information, and also for support and encouragement from other members with MS.

Feel free to browse the various forums. Ask questions, or start your own thread with a topic.

Your world will gradually stop spinning so fast. It's understandable though - you were diagnosed rather quickly! It takes awhile to digest it all.

Just know that you don't ever have to feel alone with what you're going through. We'll be here for you

Take care,
KoKo

[seattleinchicago]

Oh Ren, do I ever hear you. I had the same kind of crazy unexpected super-fast diagnosis, and right afterward I don't think either my husband or I knew how to get back to normal. Fast-forward two months into treatment: I still have days, and I know I will, but overall I'm feeling better than I thought possible. This diagnosis has kicked me into "Screw it -- I'm not putting off things I want to do" mode.

There are two books that have been extremely helpful for me. The first is "The First Year: Multiple Sclerosis, an Essential Guide for the Newly Diagnosed." The second is "MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis." I hope they bring some comfort to you, too.

[notmyms]

Hi Ren,

So sorry for your diagnosis. Reach out to this forum when you need online support or answers. As you can tell from all the replies you've gotten, it's a great group of people.

You will be able to care for your son and have a relationship with him. An infant can be exhausting, even without MS, so ask for help from your family and friends when you need it. I've found that people want to help. I was dx in '97 with two sons 11 and 13, and they are great young adults now. I didn't screw them up, thank God.

To Phoebe and Ren both, yes, you do need a good support group. If you aren't in a church I highly recommend finding a good one, and finding a small group or Sunday School class of people with your age and interests. My friends from church are an incredible support.

Also, find a bible and read Phillipians 4:6&7, Proverbs 4:20-22, Isaiah 40:28-31. They are true! This and much more from that book bring strength and comfort.

[imascatterbrain]

try to "not worry," like there is a button to hit, oh well

Hi Ren,
get ready for many people to tell you "how lucky"
you are to have gotten the DX so quickly...

I deliberately kept myself ignorant about MS progress,
so that when I was diagnosed I expected to be dead in
just a couple years,
but the picture today is much brighter than that.

Okay, I need a shower now, so good luck!

[Imagine]

Hi; and good for you

Hey Renrn. I am so impressed that you received the diagnosis yesterday- and came to this site the very next day! Clearly, you are very resourceful. I was diagnosed in 2008 with Transverse Melytis, and immediately hospitalized for 10 days. Prior to my discharge, I was told that I also had multiple sclerosis. My guess is that I've likely been sick since 2004.

I so wish that I had done as you have. I actively ignored my sxs until arriving @ the hospital via ambulance. It's amazing what one can choose to ignore. It took almost a year for me to accept that I was sick. I was determined to continue my work as a family therapist and refused to listen to anyone who would dare to say otherwise

I was unable to continue working and, subsequently, closed my practice... but, damnit--I DID NOT HAVE A DISABILITY!!! It took another year for me to apply for SSDI. Last week, I was informed that I had been approved. I am looking at things differently now. Lance Armstrong said that the only disability in life is a bad attitude. Certainly, there are disabilities.

What I have learned to do is instead of dwelling on what I no longer have, I focus on what I DO HAVE, and it is a lot! I will not tell you what a "blessing," having this disease has been; for many, it has been. I can say that life goes on. Last year, I married for the second (and last) time. My 12 year old daughter has come to love him and he adores her.

Yeah, I have some pretty rough days; but I have terrific days as well. I am fairly certain that I would have reached this place much sooner had I immediately reached out. Be very kind to yourself and I cannot emphasize enough the importance of living one day at a time (for me that's what works). I am sorry that you were hit with this There is treatment now, so we can actively take steps to, who knows... be cured. It is possible and we are on the cutting edge of so many things that were not availabe a decade ago.

Welcome. Please stay intouch-- what you say here can help so many. Be Well...Love and Light...
Shalom,
Suzanne

[twisterred]

Hi and welcome Ren,

Welcome.
It is an odd way to meet people, but contacting people with experience with this disease is a life saver.
It has kept me encouraged and feeling "normal" for over 20 years.

The advice to read and learn is great.
Try other online support groups (PatientsLikeME, MSrefugees).
There are great people there willing to help, too.

Your hubby was wise getting you to a doc. Mine did the same thing because I thought I had just kinked my back and just needed bed rest.

Getting on an approved Disease Modifying Treatment as soon as possible is important. I have had great success with Copaxone (14 years).

Some parts of life drastically changes, some is the same.
Allow yourself to grieve. It takes time and don't be ashamed to go to counseling. I did so my hubby wouldn't have to hear me all the time. It helped.

Understand that family and friends won't/don't know how to help or understand the disease, so try to be really understanding when they say or do something stupid.

Consider getting a parking placard to let you park closer to store entrances. Use it even of you walk normally. It is a tool and nothing more. It will save you from fatigue and pain, especially around Christmas, lol. Your energy is best spent on your family.
I walk normally and using it allows me spend my energy where it is best used (I had fellow MSers insist I do when I was a newbie, and I am so glad).

MS makes life interesting. it has taught me to lighten up and laugh at myself more (can't think of a word, oh well... bumped into another corner, oh well... not gonna make the house spotless, oh well...).
MS is a journey and it is alright. I was in shock and never thought I would be able to handle it, but acceptance is part of the grieving process and does come in time.

Best wishes and keep posting.

[Imagine]

Much Thanks

Hi Twistered(sp?). I just wanted to say thank you for such an uplifting post. Haven't felt well today and when I read your post, I was smiling - first time in 2 days You really made a difference in my day-- and I am sure many others. Thanks again and I hope that your days are filled with joy and that each day is even better than the one before

Shalom,
Suzanne

[twisterred]

Thanks for the kind words, Imagine.
You made ME feel good after reading your note.

I'm new to this group, but not the disease.
So, I try to offer what I can and let people know (especially newbies) that although MS is not fun, being able to take it easy and be good to oneself helps.

Hugs and thanks,

twisterred

Hi Twistered(sp?). I just wanted to say thank you for such an uplifting post. Haven't felt well today and when I read your post, I was smiling - first time in 2 days You really made a difference in my day-- and I am sure many others. Thanks again and I hope that your days are filled with joy and that each day is even better than the one before

Shalom,
Suzanne

[Renrn]

I just wanted to tell everyone how much I appreciate the answering posts.

I will be picking up the books you recommended as soon as I get a chance to swing by the bookstore. And have spent a lot of the last week or so trying to reconnect with friends that I was letting drift away out of apathy.

I also took my first Avonex shot. So at least I feel like the battle has started.

Thanks